Working with under-served communities in evaluation research

Ahead of our PHIRST webinar, Working with under-served communities in public health research, Dr Gemma Bridge, Senior Research Fellow has compiled reflections from PHIRST South Bank evaluations to date that have involved under-served groups.

Public health interventions are designed to support people facing health, social or financial challenges. Yet, the people most likely to be affected by these issues often face additional barriers to getting involved in research. In line with NIHR INCLUDE guidance these communities are described as under-served groups.

Under-served communities are those who may be at increased risk of harm, exploitation or involuntary participation in research, due to factors such as age, gender, sexuality, migration status, poverty, disability, or experiences such as domestic abuse, stigma, or financial hardship. Importantly, being described as under-served is not static but dependent on context.

For evaluators, this raises an important question: how can research include the voices of under-served groups safely and meaningfully?

Drawing on experience from NIHR PHIRST South Bank evaluations, several practical lessons emerge.

Recruitment is relational

When recruiting participants from under-served groups researchers might need to adapt their traditional methods. Some people may be wary of researchers or institutions, especially if they have had negative experiences with services in the past. Others may have limited capacity to participate due to competing pressures in their lives.

For example, people experiencing financial hardship may be juggling multiple responsibilities or appointments. Others may fear that sharing information could have unintended consequences for their benefits, immigration status, or family situation.

What can help:

• + Including time for relationship and trust building between researchers and participants
• + Allowing flexible ways to participate, including timing, location and remunerations options (e.g. vouchers or bank transfer)
• + Focussing recruitment efforts on familiar settings, such as community hubs or support services
• + Working through and in collaboration with trusted organisations, community groups and services (but being aware that some organisations can gatekeep, and leave some people, such as people that organisations consider vulnerable, unintentionally excluded)

For example, in our evaluation exploring the impact of a mental health intervention for young people, recruitment of young people was most successful when researchers worked closely with school staff and volunteers who already had trusted relationships with young people.

Ethics goes beyond formal approval

Participants may be sharing experiences that are distressing, such as domestic abuse, poverty, or stigma. Researchers must consider how discussions might affect participants and ensure that participation is safe and voluntary. Researchers should also build trust with participants by being transparent, respectful, and aware of participant and researcher wellbeing throughout the research process.

Good practice includes:

• + Being clear about confidentiality and its limits
• + Taking a trauma-informed and sensitive approach to ensure that the research itself does not contribute to re-traumatisation
• + Providing information about, or direct links to relevant support services during and after research.
• + Being aware that consent should be ongoing as participants may feel differently about taking part as the research progresses
• + Given the sensitive nature of some of the topics discussed in evaluation, acknowledging the possible emotional impact on both researchers and participants, and having support available, is critical

Language, culture and accessibility matter

Practical barriers can also affect whether people from under-served groups can participate safely in research. Language differences and literacy levels can influence levels of participation. Translation and interpretation can be important, but so too is cultural context and meaning, particularly when discussing sensitive topics such as health behaviours or experiences of services. Beyond this, participants may also have varying levels of digital literacy and access. Not everyone uses or has access to the internet or a computer or smartphone.  

Strategies that can help include:

• + Translating materials where necessary, ensuring cultural context and meaning are considered
• + Offering verbal and/or pictorial explanations rather than relying solely on written information
• + Include non-digital participation options.
• + Working with interpreters or community partners to support communication

Representation requires care

Even when research successfully includes under-served groups, there is a risk that findings simplify complex experiences into overly simple narratives. To support representation, researchers should work closely with communities throughout and aim to:

• + Be transparent about the limits of representation
• + Be aware that no evaluation can capture every perspective and thus acknowledge gaps to prevent overstating conclusions
• + Utilise participatory or creative approaches such as storytelling with communities
• + Recognise wider social and structural factors impacting on the lived experience of communities

Collaboration and empowerment strengthen research

One of the most effective ways to ensure research reflects lived experience of under-served groups is through collaboration. Empowering communities to share their voices, experiences and ideas throughout the research process is critical. In our gambling harms evaluation, the team made a deliberate decision to shift the focus of the research. Rather than only exploring the lived experience of harm – as much of the existing literature does – the research centred on understanding the diverse ways in which people with lived experience actively work to address and prevent harm. This included involvement in peer support, contributing to the training of professionals, and engaging in political campaigning – including efforts to highlight the role of the gambling industry in generating harm. By focusing on these forms of agency and action, the research was able to lend credibility to lived experience-led initiatives, while also reducing the risk of re-traumatisation often associated with repeatedly recounting harmful experiences.

In every evaluation, the PHIRST South Bank team works closely with public contributors who have lived experience of the issues, programmes or policies being evaluated, as well as with local authorities and their partners to co-produce evaluation research that responds to real-world public health priorities. Engaging with communities and ensuring that power and decision making is shared throughout the research process, can improve relevance, trust, and impact.

Key takeaway

Ensuring that under-served groups are represented in evaluation research requires thoughtful design, time, and collaboration. It involves recognising power dynamics, building trust, and adapting methods to people’s circumstances. It may also mean allocated sufficient budget, time and resources for inclusive participation.

For more information about how to engage with and meaningfully include under-served communities, you can check out NIHR’s INCLUDE guidance and the NIHR Community Engagement Toolkit.

Download this blog (PDF:3 pages)

=> Find out more about PHIRST South Bank and their evaluations